Progressive supranuclear palsy and corticobasal syndrome are progressive neurodegenerative diseases characterised by parkinsonian features (stiffness, slowness and tremor), balance difficulty with falls, abnormalities in the control of eye movements, difficulty with skilled movement (apraxia) and thinking problems. We currently do not have any information on the number of people in Ireland living with these conditions. This lack of information has a number of consequences which include an inability to accurately target resources to this vulnerable patient group and an inability to plan for delivering disease-modifying therapies when they are developed.
The aim of this study is to identify everyone with an address in Leinster who has a diagnosis or suspected diagnosis of PSP or CBS. People taking part in the study can choose to take part in a clinical interview or allow review of their existing notes and brain imaging. Participants will be invited to contribute samples of blood and spinal fluid to a tauopathy biobank. These data will be combined to help us understand more about the natural history of PSP and CBS. This information will improve our ability to provide appropriate care and support for people with PSP and CBS and their families, as well providing a useful resource future research on tauopathies.
The Meath Foundation